Diagnosed at 14 now turning 18

[Kathleen1998]

Hello my name is Karissa,

I was diagnosed with Lupus at 14 years old with stage 4 S.L.E Lupus Nephritis also along with failing Lungs and an inflamed gallbladder. That was 4 years ago and my Rheumatologist told me I would never be able to live a normal lifestyle again.

I don't listen to what the doctors have to tell me...none of it makes sense to me anyways it's a bunch of mumbo jumbo😂 just kidding... I do listen when it comes to taking my cell-cept and plaquenil and Enalapryl everyday and night. But when doctors tell me the best way to live my life is to stay inside from the sun, lay in bed and it to take it easy...I don't listen. Why?

That's not living. When I went into the hospital January 17, 2013 the doctor told me I was going to need a kidney transplant. Okay whatever.(whenever the doctor told me something negative that was happening inside my body I didn't believe it because I was stubborn) my mom was heartbroken but I would constantly tell my mom in the hospital. I have to go for a walk mom, we have to walk mom, let's walk. I kept repeating it to her (it wasn't walking it was more shuffling due to me loosing so much weight and only 70 pounds at 14 years old.)

The very next day I started getting better... the grace of God answered my prayers and healed my kidneys and my repaired my body.

I'm 18 years old now...I'm a full time CNA at a nursing home. I still have my days and whatever I gotta stay outta the sun this and that with Lupus. I don't let Lupus control me I rebel the Rhemys and do what I believe what makes me comfortable and happy.

Never let Lupus control you.

[Andfiona]

Love your post! What a great perspective and very inspiring. Live your life how you want to with what's important to you! I think health is a personal thing about how we want to live in our own environment. Enjoy the outside world it's a great place!

[Rach459]

Love this. Glad your doing well x

[Roanna]

Kathleen1998, I too was told at a young age, 19yrs. although I started getting the symptoms at 17years. I was told I would never use my hands again. I was a jock. I got lupus nephritis a few years later but I lived my life how I wanted to and did a lot of physical sports including having a dental assisting career for 20 years. I could have done what the Doctors told me to but that just wasn't me. I have met many Lupies over the years who have gone that route and I can't let myself go there. I do take care of myself and can read the warning signs and know when to slow down. Sure I have good days and bad but mostly I have fun doing what ever I do and still live my life to the fullest because I don't know when the day will come that I can't. I am now 50 years old and my hands are starting to slow down and get stiff so I am now becoming limited. I haven't practiced my dental for 10 years now because of the slight stiffness but do miss it. I know there will be a day when we will be limited but why limit yourself now. You have the right attitude and keep it up. You have put a smile on my face because I see myself in you. Thank you and keep fighting the odds.

[heatherevans28]

I know the feeling.. I wasn't diagnosed until I was 19 but my doctors constantly tell me not to do this or that.. That's not living! The week I got diagnosed I booked myself flights etc to travel Europe all summer on my own. It was hard sure, but it was totally worth it. 3 years on, my condition has worsened but I still don't do what i'm told. I'm 23 and most of the time I feel 40, but I still do everything I can.

I had an amazing A&E consultant who I met after I had been on holiday a couple of years ago (Marrakech is pretty hot and I had a severe photosensitive flare following it). He told me that I could be as careful as I wanted but I still had lupus and never to let anyone stop me doing anything. I never have.

I work 4 days a week (one thing I eventually had to concede on), I'm a manager and got promoted this year, I'm doing my degree in an accelerated format via distance, and will be doing my legal diploma thereafter. I go on holiday every year and enjoy it. I swim, do burlesque, and pole. I don't drink much anymore but I still drink socially (after a year of T Total wrecked my social life). Does my lupus love me? Not totally, it flares and plays up.. I should probably sleep much more than I do, but I am alive.

Thank you for this post. I get tired of listening to people who seem to have given up and let lupus 'win'. It's your life. Live it xx

[lotsoissues]

AMEN! God is good! Life is not about how many breaths you take. it's about quality. so, you keep living and listening to your body.